Physical Activity in Children with Prader-Willi Syndrome

Abstract

Background. Physical activity (PA) is vital for the management of weight among those with Prader Willi Syndrome (PWS). However, little is known about characteristics of PA in individuals with PWS. Objective/Hypothesis. To assess from the parent’s perspective, PA levels among individuals with PWS, their preferences for specific activities, and perceived benefits, barriers, and resources needed to participate in PA. Methods. Participants were 90 parents and caregivers of a child with PWS, predominantly in California. Survey questions included their child’s participation in different PAs, perceived benefits and barriers to enrolling their child in a PA program, and perceived needs to facilitate their child being physically active. Results. Walking was the predominant PA, representing 66% of the activity time across all age groups. Children 10-17 years old engaged in more moderate intensity PA per week than children 5-10 years old. Children 5-10 years old engaged in more vigorous PA than those 18+ years old. Parents reported that they would be encouraged to enroll their child in a PA program if it would improve their children’s motor skills and balance (78.2%) as well as stamina and strength (74.4%). Time commitment and travel were most common barriers. Less financial constraints (70.1%) and having more time (54.7%) were listed as needs. Conclusions. Similar to individuals without PWS, vigorous PA declines with age. It is recommended that caregivers and health care providers emphasize the role of vigorous and bone-strengthening PA as children with PWS approach adolescence.

The associations between diet and physical activity with body composition and walking a timed distance in adults with Prader–Willi syndrome

“…Daily muscle training has been found to increase PA and lean body mass ( 31 ). Children and adults with PWS exhibit little vigorous PA and appear to perform few activities focused on improving muscle strength ( 32 ). In children with PWS, more PA has been associated with lower BMI and reduced engagement in self-injury behaviors, such as skin picking ( 33 ).…”

Rationale and design of active play @ home: a parent-led physical activity program for children with and without disability

“…Formative work done prior to designing the intervention includes the completion of group interviews with 28 parents of children and adults with PWS (2-22 years old) and a questionnaire completed by 90 parents with a child with PWS [ 16 ]. The group interviews indicated that most parents understood the benefits and the therapeutic role of PA for their children.…”

“…Parents’ preferences for PA mode, frequency, and location for a successful PA program included: 1) Activities that can occur at home, in a caring, supportive, and non-competitive environment that foster participation from all family members; 2) interventions that include a variety of fun activities such as interactive console games, goal-oriented games, and dancing; 3) PA intervention materials such as a handbook or DVD with ideas for activities and hands-on instructions; and 4) a flexible schedule. The questionnaire findings emphasized the need to incorporate vigorous activities in the curriculum since children with PWS tend to spend more time engaging in moderate PA and much less time performing muscle and bone strengthening activities [ 16 ].…”

“…In addition, having PWS is associated with innate lethargy, delayed motor development, lower motor competencies, lower cognitive function, and behavioral challenges, with most individuals presenting with physical and intellectual disability [ 13 ]. Children and adults with this condition exhibit low levels of ambulatory PA [ 14 , 15 ], little vigorous PA, and appear to perform few activities aimed at improving muscular strength [ 16 ]. In children with PWS, more PA has been associated with lower body mass index (BMI), and reduced engagement in self-injury behavior common to PWS such as skin picking [ 17 ].…”

Metabolic responses to walking in children with Prader‐Willi syndrome on growth hormone replacement therapy

“…As for those without PWS (Goran, Reynolds, & Lindquist, 1999), regular exercise is crucial for the management of a healthy body mass in PWS (Cassidy et al, 2012). Knowing the caloric cost of a commonly reported exercise mode in PWS, such as walking (Rubin, Weiss, Mouttapa, & Barrera-Ng, 2012), can help tailor exercise regimens to manage body weight. Our study reports on the metabolic cost and substrate utilization during walking in children with PWS in comparison to controls with and without non-syndromal obesity (NSO).…”